De nombreuses familles       accompagnent leur proche atteint du syndrome de Down ou d'une autre déficience intellectuelle sur la maladie d'Alzheimer (démence) périple.

Cela peut sembler être un chemin solitaire, mais ce n'est pas nécessaire. Rejoignez d'autres aidants familiaux lors de réunions en ligne régulières pour discuter de vos préoccupations, partager vos peurs, vos joies et apprendre. 

There are many families who are accompanying their loved one with Down syndrome or other Intellectual Disability on the Alzheimer's (Dementia) journey.

It can feel like a lonely path, but it doesn't have to. Join other family caregivers in regularly scheduled online meetings to discuss your concerns, to share your fears, your joys, and to learn. 

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For more information about the online support group or how to join the monthly meetings please email familysupport@the-ntg.org.

Simply put, Alzheimer’s disease is a progressive, irreversible brain disorder that affects memory, thinking, and language skills. Over time, people living with Alzheimer’s disease may become unable to carry out daily activities.  Many adults with Down syndrome are at particular risk for this brain disease.

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Some useful resources that are available from the federal government...

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US Food & Drug Administration's 'Alzheimer's Disease'

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National Institute on Aging's 'Alzheimer's Disease & Related Dementias'

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Centers for Disease Control and Prevention's 'Alzheimer’s Disease and Related Dementias'

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Many families who don’t have access to a Down Syndrome clinic reach out to members of the Down Syndrome Medical Interest Group-USA (DSMIG) seeking expert health care for their loved one with Down syndrome. Often they find that their health providers do not have knowledge of the specific health care needs of individuals with Down syndrome. In response to that need, DSMIG-USA has developing a variety of means to share information and to support providers in caring for children and adults with Down syndrome, one is an internet ECHO series.  This series permits the ready exchange of information as well as a discussion among experts and participants. 

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DSMIG has opened its ECHO series to clinicians who have people with Down syndrome as primary care patients in April 2023. The series is designed to help families draw their primary care practitioner (PCP) onto the ECHO so that he/she will become familiar with the health issues of people with Down syndrome. The goal is to use the 'all teach, all learn' ECHO model to increase knowledge of the health and medical care of people with Down syndrome, and to participate in a virtual knowledge-sharing community. DSMIG is asking families to let their PCP know of the ECHO series and ask them to participate.

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For more information and registration: https://www.dsmig-usa.org/project-echo

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For questions please contact Emilie Perkins EPerkins@raybourn.com .

The NTG developed the NTG-Early Detection Screen for Dementia (NTG-EDSD), available worldwide, which was designed in response to requests by families, caregivers, and agencies for a tool useful to record observations of changes in function.  It can be used by anyone, family, or others.  The NTG-EDSD does not diagnose dementia but is helpful to collecting information for those pertinent discussions with a physician and for person-centered dementia care planning by families and other care providers. 

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A highly informative article in Exceptional Parent, by Dr. Craig Escudé titled, 'Dementia and Intellectual Disabilities', offers an inside view of how family members can use the NTG-EDSD.  He notes that "Dementia can be a pretty scary thing for anyone. For people with disabilities, changes or a decline in cognitive functioning can be quite challenging to recognize, specially in people who do not use words to communicate."  To read his informative explanation on using the NTG-EDSD, click here.

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For more information on our webnsite, go to our NTG-EDSD page.

The NTG has compiled a list of publications and news articles that are helpful to family caregivers. 

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To browse through this list, go to our Family Caregiver Resources page.

The NTG has compiled a full library of publications concerning Alzheimer's or other dementias as they relate to adults with intellectual disabilities. 

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To browse through our library, go to our Publications page.

Il s'agit d'un groupe de soutien pour les familles de personnes qui ont un diagnostic primaire de syndrome de Down avec un diagnostic supplémentaire de maladie d'Alzheimer ou de régression du syndrome de Down.

Ce groupe a été créé pour fournir un environnement sûr aux familles et à ceux qui s'occupent, soutiennent et aiment les personnes atteintes du syndrome de Down qui subissent une perte de compétences, un comportement difficile important ou d'autres problèmes de santé à la suite de la maladie d'Alzheimer ou de la régression du syndrome de Down.

Pour être considérée comme membre de ce groupe, toute personne qui demande à devenir membre doit répondre de manière approfondie aux trois questions énumérées. Les administrateurs du groupe se réservent le droit de refuser l'adhésion à toute personne qui n'a pas répondu aux questions avec suffisamment d'informations pour s'assurer que le groupe est bien adapté.

Empowering Ability a créé sur la façon d'utiliser la technologie pour développer un "cercle virtuel d'amis" pendant cette période de distanciation sociale et d'isolement.  Un cercle virtuel est un groupe de 6 à 8 personnes qui sont en la vie d'une personne, qui souhaite rester connectée pratiquement chaque semaine alors que la distance physique est un obstacle à la connexion en personne. Un cercle virtuel fournit une connexion sociale quotidienne, soulage la solitude et approfondit les relations. Cette formation est gratuite et se compose de 5 leçons vidéo et d'un manuel PDF de 10 pages.  Bénéficiez de la formation gratuite.

Helen: The Journal of Human Exceptionality is a magazine published as a resource for parents and clinicians regarding people with disabilities for inclusive health. It includes helpful articles, advice, and tools to advocate for your loved one. Articles range on a variety of topics, including aging.  Go to the Helen site to read or download an issue.

Notre newsletter pour les aidants est publiée plusieurs  fois par an et contient des articles et des ressources d'intérêt particulier pour les aidants familiaux.

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Les articles couvrent une gamme de sujets et de questions sur lesquels les familles ont besoin d'informations à jour, telles que la recherche, la gestion des soins, les ressources et bien plus encore.